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Looking for SCLS patients to tell their diagnosis stories

MysteryDiagnosis Message
7 Aug 2009, 07:10 PM

Hello, Mystery Diagnosis of Discovery Health Channel and TLC is now casting for it's eighth season. We feature true stories of people who have been diagnosed with a rare disorder and had trouble reaching a diagnosis. Our show is a great outlet for people to share their stories and help create awareness for orphan diseases. We are looking for candidates with SCLS that fit our criteria and would be interested in telling their diagnosis story. Ultimately we are looking for someone who experienced the full range of symptoms associated with this disease and had a hard time getting diagnosed and even may have been misdiagnosed before the official diagnosis was given. Candidates must have their diagnosing doctor, family and/or friends willing to testify their story. If you have any interest in this project please email me at I look forward to hearing from you. Thanks, Katie Mystery Diagnosis
aporzeca Message
7 Aug 2009, 09:01 PM

SCLS community members like Rnuara, Maria, Ritz, and Maire602, all of whom went years without being properly diagnosed, would seem to me to be perfect candidates to share their stories with "Mystery Diagnosis." I realize that stepping forward will entail shedding some of one's privacy, but I bet it is possible to negotiate with the show's producers to shelter aspects of one's privacy that matter the most. Anyone else who would like to help raise awareness of this rare condition, and has a story to tell -- please do! It's for a good cause! The Mayo Clinic's Dr. Greipp reports that he is seeing new SCLS patients at the clip of one every other week now, and I'm sure that is because of our shared effort to raise awareness among patients and medical professionals through RareShare and other sites.
jordansh Message
11 Aug 2009, 09:50 PM

We had quite a crazy diagnosis story, too bad Glenn is no longer here to tell it. He was diagnosed with several things before the proper diagnosis came about. We had a great medical team willing to work with him. The ID doc at Norfolk spent hours combing internet and journals of his own time because he liked our family...He was given a lead that finally sparked him off... A relief to find out what it was even though it was such awful news...
jefmom Message
27 Aug 2009, 04:14 AM

My husband was diagnosed with SCLS about two years ago. He has had multiple attacks and is currently seeing a research doctor at Vanderbilt Medical Center in Nashville, Tennessee. We saw about 13 doctors in two states before receiving the proper diagnoses. We count ourselves lucky. We would be interested in communicating with other SCLS patients.
aporzeca Message
27 Aug 2009, 11:54 AM

Dear Jefmom: Welcome to our SCLS community! First take a look at all the information that is already on this site and see if any of it is useful to you. Then please add many more details to your profile, telling us about the nature and frequency of your husband's episodes, the symptoms he experiences, the medications he has tried and have worked (or not), etc. etc. It sound to me like Mystery Diagnosis could use your story for their program, so you may want to contact Katie at (see above). If you wish to communicate with other patients you can either (a) create a separate discussion topic and perhaps people will reply to you, or (b) provide your email address and invite people to write to you, and perhaps people will. The more you tell about yourselves, the more others will open up about themselves. Also, we're looking for volunteers to have themselves tested at the National Institutes of Health, located right outside Washington DC. Think about it and if you are interested, contact the lead scientist there, Dr. Kirk Druey, at
jefmom Message
27 Aug 2009, 02:51 PM

I was so excited when I found this forum (at about midnight), I woke my husband up and told him about it. We did not know there were that many people with the diagnoses. He got up immediately and we were on this site until after 2 am. He has sent a message to Katie at TLC and is very interested in participating in the program. His online identity is dannycfi. Look up his profile to find out more about him. Thank you for monitoring this site. It is a Godsend to us.
MysteryDiagnosis Message
23 Feb 2010, 08:01 PM

Hello Everyone! I'm happy to announce that Mystery Diagnosis will be featuring Walt Breidigan and his journey with SCLS. We filmed his story last fall and we finally received an airdate. The episode is entitled "The Man Who Tripled in Size" and will premiere on Discovery Health Channel on Monday March 15, 2010 at 10pm EST. It is the first of two stories featured in an hour long show. If anyone wants to receive a DVD copy after it airs, email me your address at I wish the best to all of you. -Katie